Ashton's Heart Surgeries Fundraiser

Ashton was born with a connective tissue disorder called Loeys Dietz Syndrome. It is a very rare disease & very few doctors can treat him. He was luckily diagnosed several years ago, or he wouldn't still be alive. The specialists are 1200 miles away in Baltimore MD at John Hopkins.

LDS affects all connective tissue in their body. With Ashton, the main troubles are gastro, joint, allergies, spine, arteries, low immune system and mostly his heart. It is a life threatening non-curable disease. Life time of surgeries and medications are required to put a "band-aid" on his symptoms to keep him alive.

Since diagnosis he has had to live a "calm", lifestyle. Nothing that would raise his heart rate. Nothing that could cause an impact to him. All normal childhood activities & sports came to a halt; for life. Both could easily cause an aneurysm, ending his life. No amount of surgeries will be able to change his required sedentary type lifestyle.

It's such a newly discovered and unknown disease, bone issues haven't been proven to be LDS related. But he does break bones very easily. How often do we NOT see Ashton in a cast. Or surgeries. Titanium rods in his ankles. Etc Etc Etc. ;p

The most serious condition is his heart. 2 months ago he had to have aortic root replaced. It was stretched out like an over inflated balloon, ready to pop! During surgery they found his heart tissue is in much worse condition than they've ever seen. Sewing the graft onto his heart was like sewing on a wet kleenex; stitches pulling right out and tissue tearing.

The typical 5 day hospital stay turned into a 10 day stay....as the Cardiologist teases Ashton, anything than can go wrong, does with him. But he proves to be a fighter!

This surgery caused his valve to have a small leak. Surgeon said it should be fine for a good 10 years, if not a lifetime. Most can live like this forever. With his disease & his heart condition; it caused the small leak to stretch and become a severe leak in only 6 weeks time. Versus the estimated 10 years. Now his upper chamber (which almost NEVER happens) is stretching and over inflating becoming a life threatening situation again.

So we are only 2 months later he needs to have another heart surgery. He will need his aortic root replaced again with a larger graft to attempt to hold better & longer. As well as replace his valve with a mechanical one.

Spending so much of our lives in the Doctor and hospitals this poor kid walks into any Children's Mercy in KC area; and most all nurses, techs and doctors greet him by name in the halls. It's a warming feeling, but a sad situation. It's a standing joke in our family that we can not go a week without being in the hospital or Doctor. It's our home away from home!

This being such a rare disease we continue run into procedure after procedure not being covered by insurance. Obama Care or not, premiums go up each year. Deductible and coinsurance goes up each year. His long list of prescriptions go up each year. Doctors and hospitals REQUIRE deductibles etc to be paid upfront before they will treat him. His closest doctor is an hour drive. But much closer than his specialist 1200 miles away. Our mom, would never be able to work and not be fired from missing work on a very regular basis. The current medical debt will never be paid off in our lifetime; but he's alive and that's all that matters.